Hi McKlarke,
It sound like your daughter has had a very rough time to say the least. I am very aware of all the problems that come with these large tumors. My daughter, Chelsea, also had a large AN. It was 6cm, said to be the size of a lemon. I like how things are measured by food. Anyway, she had many complications after her surgery. One was the loss of her swallowing reflex and had a paralyzed right vocal cord. She had a feeding tube inserted through her nose just 2 days after surgery on June 18 and ended up with a peg tube which was inserted the end of July. She was in the hospital from June 16- Sept. 16, 2006 and went home with the peg tube. She has a wonderful head and neck surgeon and in Oct. when she went in for a swallow study, which she failed, he told her to go out and try to eat something soft like pasta and if she started choking then don't eat anymore of that type of food and try something else to see what she could eat. She started with mac & cheese then lasagna. She ate very slowly and focused on what she was doing. She was also told to try eating with her head slightly bent forward with her chin towards her chest. It worked and after 99 days of not eating anything by mouth we were thrilled. For a couple of months she had to really concentrate on what she was doing so she wouldn't choke. She had 6 weeks, 5 days a week, of radiation from late Oct. through mid Dec. They had her keep the peg tube during this process. After radiation was over they removed the tube. She has been doing fine with her swallowing. She still needs to have another surgery before June on the vocal cord at which point we are hoping that she won't need to have another peg tube. Where was your daughter treated and what do her doctors say about her swallowing reflex?
Take care....Michelle
